Njengomzali, ngaba wakha waziva ngathi umntwana wakho wahlukile kancinci kwabanye abantwana? Mhlawumbi ufika kade kancinci ekuthetheni, okanye mhlawumbi uthatha ixesha elide ukufunda into entsha. Zininzi izizathu zoku. Kodwa namhlanje siza kuthetha ngemeko ekhethekileyo yemfuza enokubangela imeko enjalo, kodwa engathethwa kakhulu ngayo kuluntu lwethu. Leyo yiFragile X Syndrome .
Ngamafutshane, yintoni iFragile X Syndrome?
Le yimeko yemfuza. Oku kuthetha ukuba idluliselwa kwizizukulwana ngezizukulwana. Le meko inokuchaphazela ukufunda komntwana, ukuziphatha kwakhe, inkangeleko yakhe, kunye nempilo yakhe iyonke. Abanye abantwana banokuba neempawu ezincinci kakhulu, ngelixa abanye banokuchaphazeleka kakhulu. Ngokubanzi, abafana bachaphazeleka kakhulu kunamantombazana .
Abantwana abazelwe benesi simo banokuba neengxaki zokukhula, ezifana nokukhubazeka kokufunda kunye nokukhubazeka kwengqondo. Kodwa ungakhathazeki. Ngonyango olufanelekileyo, imfundo ekhethekileyo, kunye nonyango, aba bantwana banokufunda baze baphuhle ngokupheleleyo.
Zithini iimpawu zale meko?
Umntwana one-Fragile X unokubonakalisa iimpawu ezahlukeneyo. Ezinye zeempawu zezokuziphatha, ngelixa ezinye zezomzimba. Masizijonge ngokwahlukeneyo.
| Uhlobo oluneempawu | Iimpawu eziqhelekileyo zibonwe |
|---|---|
| Iingxaki zokufunda nokuziphatha |
|
| Iimpawu ezibonakalayo ngokwasemzimbeni |
Into ebalulekileyo kukuba ayizizo zonke ezi mpawu ezenzeka kumntwana ngamnye. Kwakhona, ukuba nezi mpawu akuthethi ukuba umntwana uneFragile X. Kubalulekile ukubona ugqirha ukuze kufunyanwe isifo esichanekileyo.
Unxibelelwano phakathi kweFragile X kunye ne-autism
Kukho unxibelelwano phakathi kwezi meko zimbini. Malunga nama-40% abantwana abaneFragile X banokuba ne-autism. Kwakhona, malunga nama-80% abantwana banokuba neengxaki zokuqwalasela, ezifana ne-'ADD' okanye 'ADHD'.
Le meko idluliselwa njani kwizizukulwana ngezizukulwana?
Oku kuyinkimbinkimbi kancinci, kodwa ndiza kukuchaza ngokulula.
Njengoko nisazi, yonke into emzimbeni wethu ilawulwa ziijini. Le meko ibangelwa kukuguquka kwejini ekuthiwa yi- FMR1 . Le jini ikwi -chromosome X. Iproteni eyenziwe yile jini ye-FMR1 ibalulekile kwiiseli zemithambo-luvo ebuchotsheni ukuze zinxibelelane. Le protein iyimfuneko ukuze ingqondo yomntwana ikhule kakuhle.
Abantwana abaneFragile X bavelisa iprotein encinci kakhulu okanye abayenzi kwaphela emizimbeni yabo.
Khawucinge nje, kukho inxalenye ebizwa ngokuba yi-'CGG' kule gene ye-FMR1. Kumntu ophilileyo, le nxalenye iphindaphindwa izihlandlo ezi-5 ukuya kwezingama-40 kuphela. Kodwa kumntwana one-Fragile X, le nxalenye iphindaphindwa izihlandlo ezingaphezu kwama-200 . Okukhona olu phindo luphindaphindwa izihlandlo ezininzi, kokukhona iimpawu zinokuba nzima ngakumbi.
Ngubani lo uvela kumntwana?
- Kumama: Ukuba umama uthwale le gene ye-FMR1 etshintshileyo, umntwana wakhe (nokuba yindoda okanye ibhinqa) unethuba elingama-50% lokuba nale meko.
- Kutata: Ukuba utata unale gene, ngabantwana abangamabhinqa kuphela abaya kuyizuza kuye. Abantwana abangamakhwenkwe abazuzuli le gene kuba bafumana i-chromosome Y kutata wabo.
Yingakho abafana bechaphazeleka kakhulu yile meko. Ekubeni amantombazana enee-chromosomes ezimbini ze-X, nokuba enye inengxaki, enye i-chromosome ye-X ephilileyo inokulawula umonakalo ngandlela ithile.
Uxilongo kunye nonyango
Akukho zinto zinobungozi ezinokulawulwa. Umngcipheko ophambili yimbali yentsapho yale meko. Ke ngoko, ukuba umntu kusapho lwakho unembali yokukhubazeka kokufunda okanye i-autism, ungafuna ukuthetha nogqirha wakho malunga nokufumana ingcebiso yemfuza ngaphambi kokuba nomntwana.
Indlela yokuxilonga esi sifo?
- Ngexesha lokukhulelwa: Oku kungavavanywa nangaphambi kokuba umntwana azalwe. Uvavanyo olubizwa ngokuba yi -amniocentesis (ukuvavanya ulwelo lwe-amniotic esibelekweni) okanye i-chorionic villus sampling (CVS) (ukuvavanya isiqwenga se-placenta) lungasetyenziswa ukubona ukuba kukho utshintsho lwe-FMR1 gene.
- Emva kokuzalwa: Le meko inokuxilongwa ngokuchanekileyo ngovavanyo lwegazi olulula olwenziwa emva kokuba umntwana ezelwe.
Zithini iindlela zonyango?
Okokuqala, khumbula ukuba akukho nyango lweFragile X okwangoku. Nangona kunjalo, kukho unyango oluninzi olunokunceda ukulawula iimpawu kwaye luncede umntwana aphile ubomi obungcono. Okukhona olu nyango luqalwa ngokukhawuleza, kokukhona iziphumo zingcono.
| Iindlela zonyango kunye nolawulo | |
|---|---|
| Unyango |
|
| Imfundo kunye nokusingqongileyo | |
| Amayeza | Ugqirha angakunika amayeza okulawula iimeko ezifana nokuxhuzula, i-attention deficit hyperactivity disorder (ADHD), ixhala, kunye nokudakumba. Musa ukunika umntwana wakho naluphi na unyango ngaphandle kwengcebiso kagqirha. |
Injani imeko xa umntu ekhulile?
I-Fragile X yimeko ehlala ubomi bonke. Nangona kunjalo, ngenkxaso kunye nonyango olufanelekileyo, abantu abaninzi baphila ubomi obuphumelelayo. Malunga nesithathu kwisithathu sabasetyhini banokuphila ngokuzimela. Amadoda adla ngokufuna inkxaso engaphezulu.
Le meko ayifinyezi ubomi babo. Banobomi obufanayo nomntu ophilileyo. Into ebalulekileyo kukuqonda izakhono zabo nokubakhuthaza ngokufanelekileyo.
Umyalezo Wokuya Ekhaya
- Isifo seFragile X sisifo esidluliselwa kwizizukulwana ngezizukulwana. Asibangelwa yimpazamo yomntu.
- Oku kudla ngokubachaphazela kakhulu abafana.
- Ingabandakanya ubunzima bokufunda, ukulibaziseka kokuthetha, iingxaki zokuziphatha, kunye nezinye iimpawu zomzimba.
- Kubaluleke kakhulu ukuxilonga isifo kwangethuba kwaye kuqaliswe unyango olufanelekileyo (intetho, umsebenzi, unyango lokuziphatha) kumntwana.
- Nangona kungekho ndlela ipheleleyo yokunyanga oku, ngokuphathwa kakuhle kunye nenkxaso yothando, umntwana unokuncedwa ukuba aphile ubomi obunenjongo nobonwabisayo.
- Ukuba unenkxalabo malunga nokukhula komntwana wakho, thetha nogqirha wakho wabantwana (ugqirha) ngokukhawuleza.
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